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Die the Way You Want To

By Ellen Goodman
Harvard Business Review
January 11, 2012

If there is a condition that everyone in this wide, contentious, diverse world shares, it is this one: mortality. We can say with 100% certainty that all of us are going to die. 

We all know this, and yet we have been immeasurably slow in recognizing that many of the people we love are not dying the way they would choose. Consider that in surveys 70% of people say they want to die at home, but 70% die in hospitals or nursing homes. “Dying at home” means not just where people want to die but how: in comfort, among people who care about them, and doing what matters for as long as possible. Too few of us have seen our loved ones have what we would call a “good death.” Instead, their deaths often leave us guilty, depressed, and with a sense of foreboding of what our own experience might be. 

So, if we want to tackle a problem that affects all of us, let’s think big. If we want to transform health care, let’s change the way we die. 

This is the goal of the Conversation Project, which began with a group of caregivers, clergypeople, journalists, and others sharing stories. We talked about the trauma of dealing with a cascading number of medical decisions in the face of uncertainty about the wishes of our loved ones. Now, together with the Institute for Healthcare Improvement, we’ve set a simple and transformative goal: to have every citizen’s end-of-life wishes expressed and respected. 

We believe that the lever to begin this dramatic change is a willingness to talk as individuals, family members, and a culture about what we want when, as they say, the time comes. The first place for these hard conversations is not in medical offices with doctors, who are often uncomfortable with and untrained in initiating them, and it’s certainly not in emergency rooms or intensive care units. It’s at the kitchen table. There we can talk not only about the treatments we want and don’t want, about “extreme measures” and comfort, but also about values, hopes, and desires for our last days. We can share our wishes with the people who matter and who may end up speaking for us. 

We have made huge cultural changes before. A generation ago, Americans transformed birth. That didn’t happen because doctors urged women out of stirrups; hospitals didn’t put out the welcome mat for dads and their video cameras. No institution promoted soft lights and doulas. Instead, women recognized that there was a better way and insisted on changing their own experience.

Today we’re recognizing how badly we are “doing” death and that we must change our experience with it, too.

It won’t be easy to transform a norm. We still engage in a conspiracy of silence and denial. Parents are reluctant to worry their adult children; children are uncomfortable bringing up dying with their parents. In our attempts to protect one another we often end up alone and uncertain.

The Conversation Project wants to create a movement that will make these talks easier, with a forum for sharing stories, a marketing campaign, and resources for conversation starters and guides to help people who don’t know where to begin. 

If our audacious idea were in a course catalog, it would be listed under humanities, not economics. Nevertheless, we know that 25% of all Medicare expenses are incurred by the 5% of people who are in their last year of life. One study has shown that simply having the conversation can cut end-of-life costs for cancer patients by 36%. Another study concluded that conversations with cancer patients in their last week of life alone could make a difference of $304 million a year. Research also shows that people who have had these conversations often choose less aggressive treatment—and yet live longer. 

Too often talking about death and money raises the specter of “death panels.” The public debate about health care is framed in the language of cost cutting and rationing—as what health care reform will take away from you. But what if we could break out of that frame? This is one area in which letting patients’ choices drive decisions could result in lower costs—financial and emotional ones. We may even be able to rebuild trust in the medical system by respecting people’s wishes. Most important, we can ensure more-humane deaths. 

So our audacious idea is a simple question: Have you had the conversation?